A New Front in the Lyme Wars

Ixodes scapularis, the black-legged tick, is a vector of Lyme disease.

Photograph by Dr. David Phillips/Visuals Unlimited/Corbis

On December 15th, without much ceremony or public comment, Governor Andrew Cuomo signed a law that has the potential to change the way medicine in New York is practiced. Frequently referred to as the Lyme Doctor Protection Act, the law prohibits the state board of medicine from investigating complaints of substandard care "based solely on their recommendation or provision of treatment modality that is currently not universally accepted by the medical profession.”

The act, an attempt by legislators to respond to the constantly increasing burden of illness caused by Lyme disease, is nearly without precedent in its breadth. The impetus and advocacy came from Lyme activists, who have for years argued that conventional medical definitions of the disease are inadequate. But the odd wording—“including but not limited to, varying modalities used in the treatment of Lyme disease and other tick-borne diseases” (emphasis added)—reaches far beyond one issue. There are people who dispense what can only charitably be described as “unconventional treatments’’ for nearly every disease, including cancer. This law seems as if it was written, perhaps accidentally, for them. (The governor has reportedly said that he will attach a memo to the bill that will eliminate the confusion, but so far he has not.)

Nobody disputes the existence, the danger, or even the rising incidence of Lyme disease. It is an infection caused by the bacterium Borrelia burgdorferi. In the Northeast and the Midwest, B. burgdorferi is transmitted by the bite of a black-legged tick, Ixodes scapularis. In the Western United States, a related tick, Ixodes pacificus, prevails, and in Europe the main vector is Ixodes ricinus.

As I learned when writing about Lyme for The New Yorker, nearly everything related to the disease is disputed. The new law is just the latest example of the divide. Supporters consider it a long-sought recognition that conventional medicine has failed to provide adequate treatment to hundreds of thousands of people. They believe that the disease can linger for years—either because it was not at first detected, or because treatment failed.

They often cite the remarkable decision, taken two years ago by the Centers for Disease Control and Prevention, to increase the number of annual diagnoses by ten fold, from thirty to three hundred thousand. "We did it!" wrote Jill Auerbach, chairwoman of the Hudson Valley Lyme Disease Association**, **in an e-mail to supporters after the bill was signed. "It was our ability to work together that we were able to educate the [state] government to the dire need for sick people to be treated as individuals, especially when the science ... is not settled."

Others, including many physicians who have successfully treated Lyme for years, see the law as an invitation to unscrupulous doctors (or nurses) to deploy nearly any treatment they consider useful—regardless of whether there is scientific evidence that it works. Michael Ameres, who practices medicine on Long Island, which has been heavily affected by Lyme, expressed a common sentiment on an open legislative forum before the bill was signed:

This bill will legalize medical quackery! Working in a Lyme disease epicenter I have seen it all and the last thing we need is to give quacks a free reign in treating every symptom as Lyme disease (usually for their own profit). I have seen plenty of people with depression (and other non-Lyme illnesses) attributed to "Lyme disease" get round after round of antibiotics without help yet continue to swear by it because their "Lyme expert" told them they needed it. This bill will weaken the medical profession and put patient's lives at risk.

The official position of conventional infectious-disease doctors has been that, in almost all cases, Lyme is easily recognized (by a bright red bull's-eye rash), easily treated with antibiotics, and easily cured. That is true; moreover, thousands of people each year become convinced that they have Lyme disease although they have no specific symptoms and have never tested positive for the bacterium. They say that lingering effects include strange joint pains, neuralgias, headaches, fatigue, and other complaints, few of which are specific. Often they receive long-term intravenous antibiotics, even though the risks (including serious infections) of such treatment have not been demonstrated to outweigh the benefits (if there are any).

And yet, it is impossible to deny that there is a third group of patients: thousands of people—possibly tens of thousands, or more—who never get a rash, who don’t realize at first they are infected, or for whom the normal treatment of oral antibiotics does not succeed. They see the disease as difficult to diagnose, rarely cured, and widely ignored. Moreover, at least four pathogens, in addition to the Lyme bacterium, can be transmitted by the black-legged tick: Anaplasma phagocytophilum, which causes anaplasmosis; Babesia microti, which causes babesiosis; Borrelia miyamotoi, a recently discovered genetic relative of the Lyme spirochete; and Powassan virus. Some of these infections are more dangerous than Lyme, and more than one can infect a person at the same time. Simultaneous infection, scientists suggest, may well enhance the strength of the assault on the immune system, while making the disease itself harder to treat or recognize.

I have an instinctive loathing for the middle ground, but that area, somewhere between the medical establishment and the activists, is exactly where I find myself. One would have to ignore emerging scientific data to argue that Lyme disease is a settled problem, and that all those people have simply turned to a Lyme diagnosis because they don’t know what is wrong with them. There are too many people who have been infected and too much that is unknown about the epidemiology of the disease. We need better tests, so that there is no doubt about who is, and who is not, infected, and better treatments for those who are.

Many doctors have been investigated, and in some cases even censured—unfairly in my view—for their attempts to treat the complications of Lyme with longer courses of antibiotics and combinations of other drugs. This bill ought to put an end to that, which is a blessing for their patients. People deserve to make their own choices about medical treatments available to them, as long as they are informed about both the risks and benefits—and the vast majority of physicians really do believe in the Hippocratic oath.

Nonetheless, this law, as written, can be interpreted as a license to be a witch doctor. That will serve nobody, least of all the many thousands of people who deserve scientific solutions for their complex and unquestionably distressing illness.

Michael Specter has been a staff writer at The New Yorker since 1998, and has written frequently about AIDS, T.B., and malaria in the developing world, as well as about agricultural biotechnology, avian influenza, the world’s diminishing freshwater resources, and synthetic biology.